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Permanent SCS Surgery for Head Pain Was Implanted

mcarr36mmcarr36 Posts: 73
edited 06/11/2012 - 8:32 AM in Chronic Pain
Hi friends,
I made it through the surgery for my 2nd SCS implant. The surgery was brutal. It lasted over 3 hours. When I was awake to test the leads I was in agony. They had a very difficult time getting the leads placed. I have a lot of scar tissue. I am happy to say that I believe the leads are placed correctly and I will get the relief I am looking for. I am going to see my doctor this morning to have him check the incisions. I have a huge amount of swelling where the battery is placed on my side, against my ribs. The incision is about 5 inches. The other incision runs all the way up my neck and about 2 inches up the back of my head. It is at least 6 inches. I have had to sleep sitting in a chair because the pain is too intense when I lay down. I am in terrible pain and I am having constant spasms. The pain medicine is not helping very much. My doctor told me to expect a painful recovery and I understand this is normal and it will take time to heal. My last SCS surgery was nothing like this one. Ouch!!
After I meet with my doctor this morning I will meet with the rep to get a little more programming. I am getting good coverage for some of my head pain but I definately need fine tuning. It is my experience that the coverage will get better after the swelling subsides. I am confident that this new SCS will help me have a better quality of life. I will keep you all posted. Thank you for your concern and support!



  • Boy it's good to hear from you. You have been in my thoughts every day.
    I am so sorry you had to go thru such an ordeal but lets prey it was worth it.
    I was awake during my implant too but it was over in a snap and I felt no pain.
    Best to you.
    Hugsssssssss >:D<
    Patsy W
  • Sounds brutal, I guess I don't need to say, "take it easy"...

    Thanks for posting, hope you feel better soon.
    yeah, it takes a while for things to calm down and the Swelling and such can lead to SCS changes as you heal.

    But you know all that!
  • Have any of you had the Eon mini SCS implanted? I am facing the surgery in a month or two and am looking for input on which models are covered by insurance, which ones are easiest to implant, actually anything from anyone's experience.
    ANybody out there?
  • I think it depends on who you see as to what they prefer. Plus what they are practiced and licensed to use. In my case they told me I would get the Medtronic restore Ultra. On day of surgery I was told that approval had not been given for them to implant the Ultra at that hospital yet so they were going to implant the Medtronic Advanced.

    As for insurance coverage, I believe that if they cover one they will cover them all, just depends on what you and your doctors agree on. you won't notice much difference in the surgery. It is all the same. Some of the units are bigger than others. I'd prefer a smaller unit, but mine goes for weeks without a charge so it is what it is.
  • so sorry pain was bad. :| you must be relieved it is over. what is it about the neck. my neck operation was so much more painful than the lumbar surgeries.
    It's wonderful you have such good coverage. =D> I will be following your progress and wish you the very best... :-C
  • Great to hear your surgery is done and the healing can begin. Surgery in that area is always brutal and takes several weeks to begin feeling better. Hopefully the doc can give you something for the spasms.

  • I just had the Eon mini stimulator implant the 4th. of June.
    All brands of SCS are covered by insurance that I know of.
    My battery is about the size of a silver dollar and weigh about the same. Have you had the trial yet?
    If not, first you have a trial with the wires (leads) placed beside your spine with the wires dangling from your back. They are long and the controller is attached to the ends of the wires. The trial is anywhare from a few days to a week. This is so you will know if the stimulator works for you before the permanent implant. All Insurance Companies require you to have a phych evaluation. This is done to see if you are depressed. If they find you are, the depression must be treated first. There is nothing to the test. A piece of cake. When they do the trial implant you are asleep but they wake you long enough to see if you tingle in the right place, then you are put back to sleep. No pain.
    My pain Doctor waited 2 weeks before he did the permanent implant. He believes it reduces chances of infection.
    You are awake but sedated some during the permanent implant. I felt no pain at all. My pain Dr. keeps all his patients in the Hospital over night. No one else does this I don't think. You will have some pain but it is treated.
    You have to be very careful and give the leads time to scar into place. No lifting anything over 5lbs. no reaching over your head or twisting side to side. The leads can slip out of place and must be replaced. I slept in my sisters recliner for about 3 days and then moved to a bed and slept on my back with no problems. You will need help for a few days.
    My stimulator is in my lumbar spine. My pain is in my feet and legs below my knees. The pain is savage. The stimulator reduced my leg pain by 100%and my savage foot pain by 60%!! I can accidently brush my leg against something and not scream and jump from pain!! Isn't that wonderful??
    I still take pain meds for break thru foot pain but not in the large doses I was taking. The hope is to reduce the amount of pain meds you have to take and reduce your pain level. It is not a cure but a treatment that you have to live with the rest of your life.
    I do advise you to have the trial and I am sure everyone on here feels the same.
    I hope my information has helped you. To read more about the SCS type SCS in the search box at the top of this page and it will take you to page after page of comments from everyone who has the implant.
    I Just want to remind you again. The SCS is not a cure. If it reduces your pain by 50% it is considered a success. Keep an open mind. You are going to tingle all the time ehere ever your pain is but you can turn it on and off and control the amount of stimulation. Some people can't take the constant tingling but it took me about 15 min. to get use to it. It has to be re-charged every week thru the skin.
    You will live with it the rest of your life unless for some reason it has to be removed.
    I have only had mine a very short time but I will never part with it!! I will take the tingling any day over the pain!! It has given me my life back!! I love it!!
    Best of luck to you.
    Patsy W
    And best to you Melissa. We have all been waiting to hear from you. I know it took a lot for you to post this. Thank you.
    Sending you a very special hug... >:D<
  • Hi Melissa,
    I'm glad you updated. I've been thinking of you, wondering how things went, and was really happy to see your post.
    Hope the doctor thought your incisions were healing well.

    However I'm so sorry to hear how much pain you're in. It sounds like you're doing a good job keeping focused on the point beyond right now - the point when you begin to feel relief that you can depend on from the headaches.

    I'm glad you have this much of it behind you, and that the healing has begun. Hang in there and keep us posted when you feel up to it. Hope overall every day gets a little bit better.

  • Hi my friends,
    I am getting better day by day. The pain is much better since the doctor told me to double up on my pain meds and my muscle relaxer. I am still very swollen and bruised. I have been using both stimulators 24 hours a day. The one for my head does need additional programming. I get good stimulation but only near the top of my head. I need to have the coverage start much lower. I have an appointment with the Boston Scientific Rep. in a few weeks. I should be pretty well healed up by then. I am sure he will be able to make the adjustments. I remember getting near perfect coverage during the surgery so I am not worried. I have been very careful, wearing the neck brace and not moving around too much.

    Take care everyone,
  • Been rough it sounds like!!! Been praying for you and I hope they are able to target your pain with the adjustments they will make with the programming!!
    Keep us posted on how you are feeling!!
    GOD BLESS!!!
  • Hi, I am a newbie but an oldtimer to neck and head pain. I have tried enough things to be scheduled for a cervical scs on Aug 8th. Your story interests me as I have headaches and neck pain. I qualified for an occipital nerve decompression but my insurance won't pay.."experimental"
    The neurologist and pain doc. went back and forth as to whether I should get the cervical or occipital stimulator. I get injections in both places. They settled on the cervical and he is going to place the leads as high as he can. When I mentioned getting both, I got the impression that was not done. Hmm...I see it is. I am curious about your eventual outcome and I am so sorry you hurt so bad...The pleasure of pain is what I say...you have to get pain for relief many times...PT, massage, injections, surgery..etc.
  • Hi,
    I am happy to hear you are getting the SCS. Are you getting the trial on Aug. 8th? I had my first SCS done a couple of years ago to help with arm and neck pain. Works great for arm pain! I get some coverage for my neck but not as much as I would like. My new SCS is implanted to target the occipital nerves. I am getting some coverage for my head pain. I need more programming to get better coverage. I am still early in the recovery phase. The surgery was two weeks ago. I have heard of people that get coverage for both the neck and the head pain with one SCS. I am praying that you will be one of them.

    Take care,
  • I have a cervical SCS and I get coverage of my head, neck, shoulders, arms and hands. Initially it did not cover my head, but after some creative reprogramming, I have excellent coverage. Good luck with your upcoming procedure.

  • Hello everyone,

    I have been reading these posts for several months now but just joined. I received my permanant SCS 2 days ago. I was implanted in my lower thoriac spine to cover my legs and feet. The trial worked wonders for me almost instantly so i opted for the real deal. The surgery took 3 hours and left me with 2 incisions on my back and 1 on my right buttocks. The pain is not really that bad but its hard to get comfortable. The PM could not start the IPG because it would not communicate with the computer due to excessive swelling at the moment. Hopefully in a few days we can get it to communicate. If the real deal works as well as the trial it is all worth the discomfort for a few days. I have been living with neuropathy for 4 years with little to no relief from the meds. It was a miracle that i found an excellent PM that suggested SCS to me.If anyone is considering this, give it a chance. The rewards are worth the discomfort.
  • Hi Melissa,
    I haven't logged in for awhile. How are you doing? Did you get the rep to tweek your progamming for more head coverage? Hopefully some of the surgery trauma pain is abating. I know you had a lot of pain post-surgery.

    My husband's ON has subsided some - comes and goes, right now is better - so we're both in a happier frame of mind.

    He mentioned this morning that overall the head pain seems not been as bad since the scs trial (even tho it didn't cover that area). To me that means either - it's neck/shoulder spasm in response to pain that sets off the ON and he got enough reduction in that pain to break the cycle or, just coincidence. Hard to know.

    Anyway - hope you are realizing more relief by now, and maybe able to be working some. Let us know what's going on if you feel like it. (Sorry if you've posted update elsewhere - i'm not too good at navigating this site!)

  • Just read your comment. I also suffer from Neruopathy and had an SCS implant last month. I understand what you mean when you say you get vey little relief from pain meds. Neuropathy is a bugger to treat!!
    I had a good trial but still have break thru pain in the sides and soles of my feet. It took care of some of my foot pain but not all. But it will not take care of all the pain. Now my pain Doctor said I need a pain pump!! I do not think so!! No one will ever mess with my spine again!!
    Best of luck with your implant. I do hope it works out for you.

    How are you doing sweetie? I have not been keeping up with my friends like I should. Sorry.
    I do hope all is well for you.

    Hugssssssssssss >:D<
    Patsy W
  • Hi friends,
    I am still trying to get my SCS's fine tuned. At this point I am having a bit of trouble with both of my stims. My old one (the one I use for arm pain) is now sending stimulation to my left leg. Not Painful but not comfortable. I am forced to put up with it at the moment because I need to use the SCS to help with my arm pain. I never turn it off. Works really good for arm pain. The new SCS (for the head pain) is only working at the base of my head and I really need the coverage to go up higher. I met with a rep a couple of days ago and she really did not help me. I am going to have an x-ray this week (I hope) to make sure the leads have not migrated. I have been very careful and I doubt the leads have moved. The doctor thinks it will all be okay and to give it time. What choice do I have? I am trying not to worry.

  • So happy to hear from you. I do wish things were going better. It's good that you are keeping your hopes up. That's all we can do can't we.
    I still have hopes that things will get better for me. Right now I can't get either of my Doctors to work with me on my pain management.
    They seem to think now that I have the stimulator I no longer need help with pain. Go figure.
    I still have a lot of foot pain and really need help with it.
    Best to you sweetie. I do hope to hear better reports from you soon.
    Hugssssssss >:D<
    Patsy W
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